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Motion defeated for MPPs to study rare diseases

To the disappointment of Kitchener-Conestoga MPP Michael Harris, the governing Liberal government defeated his motion Thursday to create an all-party committee studying the treatment of rare diseases in Ontario.

“Today we had the opportunity to rise together to meet the challenges faced by those who have suffered in isolation for too long,” Harris said in a statement. “And government members chose to deny sufferers the chance to be heard.”

Harris has travelled around the province, hearing from people with rare diseases. They are often expensive to treat because of the small number of patients. The drugs alone can cost hundreds of thousands of dollars a year. Some patients have mortgaged their homes or relied on community fundraising.

Earlier this week, Health Minister Eric Hoskins promised to set up a working group of experts and patients to recommend solutions for sufferers.

But a group like that would take the discussions behind closed doors and away from public view, Harris said.